An Evaluation of the New York City Hepatitis C in Youth Surveillance System Pilot Project

BACKGROUND: Several United States jurisdictions have reported increasing hepatitis C infections among youth. The New York City (NYC) Department of Health piloted a surveillance project to investigate whether this was occurring locally and help plan for a sustainable surveillance system for investigating hepatitis C reports in youth. We evaluated this pilot based on CDC surveillance evaluation guidelines.

METHODS: We investigated individuals who were reported from March 15-May 15, 2011 through routine surveillance to be NYC residents aged 1-25 with hepatitis C. We collected clinical, demographic, and risk factor information by contacting clinicians; we also interviewed cases 18 years or older. We analyzed these data to evaluate resources required, data quality, and representativeness. We assessed resource use by determining the time required for investigations. We assessed data quality by determining questionnaire completion rates and percentages of missing/unknown responses; for questions asked of clinicians and patients, we compared clinician and patient responses. We assessed representativeness by comparing cases for which patient questionnaires were and were not completed.  

RESULTS: Of 81 cases identified, 34 (42%) were excluded because they did not have hepatitis C infection (n=17), were older than 25 (n=10), lived outside NYC (n=3), or the clinician could not be reached (n=4). Thus, clinician questionnaires were completed for 47 cases. The most common risk factors for infection were injection (18 (38%) cases) and intranasal (16 (34%) cases) drug use. The median investigation time was 54 days for clinician and patient qestionnaire completion, and 23 days for clinician questionnaire completion only. Patient questionnaires were completed for 10 (24%) of 41 cases 18 years of age or older. The mean percentage of missing/unknown responses was 34% for the clinician and 7% for the patient questionnaire. For questions asked of clinicians and patients, the mean percentage of responses with information from the patient only was 40% and the mean percentage of responses with disagreement between clinician and patient responses was 5%. There were no significant demographic differences between cases with and without completed patient questionnaires.

CONCLUSIONS: This pilot provided useful data on characteristics and correlates of hepatitis C infection among NYC youth. Though data from patient questionnaires were of higher quality than data from physician questionnaires, the completion rate was low, and interviewing cases more than doubled investigation time. Cases with completed patient questionnaires were representative of all cases. Given limited staff resources, we recommend that ongoing surveillance should eliminate the patient questionnaire and collect information only from clinicians.